Nicole Johnson was crowned Miss America in 1999, five years after her diagnosis with type 1 diabetes during college. Now a mom, Nicole reflects on the changes she’s seen since she first started her diabetes advocacy and the importance of role models with type 1.
Q: From your crowning as Miss America to today, you’ve become a leading voice in the type 1 diabetes community. What’s changed since you first became an advocate?
A: When I was Miss America, parents would often hold their children away from me and explain that they didn’t want their children to “catch diabetes” from me. Thankfully, type 1 diabetes has become much better understood since then; there’s less of a stigma. It’s also become more socially acceptable to care for your diabetes in public. After I was diagnosed, and even as Miss America, I was often criticized for wearing a device people could see (my pump) or for checking my blood sugar in an obvious way. The perception changes that have taken place are extremely helpful for both adults and children with diabetes. To feel accepted is a huge part of being able to personally cope with life with a disease. Challenges do remain, but we have come so far!
Q: Speaking of public acceptance, you were spotted on social media picking up the new American Girl® doll type 1 diabetes care kit for your daughter. What did she think of it?
A: First, how special to see a commercial brand embrace diabetes! When I saw the kit at the American Girl store with my daughter, we both cried. It meant that in a small way society was telling us they understood. The emotion in the experience was intense and unexpected. After more than 23 years of diabetes, I would have never guessed a doll would move me to tears. I suppose my winning Miss America with diabetes may have been similar for many others. When they saw a girl with diabetes like them on a stage and being awarded a prize, it was freeing!
My daughter [who does not have diabetes] now plays “diabetes” with her doll, and in many ways it helps to show me how much she understands the challenges her mommy deals with and how she admires the strength and courage required to cope with type 1. I have bought multiple kits to give to all my friends. It’s a way for me to help inspire future doctors and nurses to pursue their dreams. And it is a really well-done item! My doll and my daughter’s doll both have diabetes for the time being.
Q: Having someone else with type 1 diabetes to look up to is obviously so important — what has your own experience as a role model been like?
A: From my Miss America experience, I’ve shared with many kids the opportunity to wear my crown. I hope this has been a small point of inspiration in their lives… illustrating that anything is possible with determination, willingness to chase a dream, and dedication to being healthy. When I see children put on my crown and tell me their dreams, their eyes light up, and I can see belief taking root in their hearts. It’s an incredibly special experience. Sometimes there are tears — those are happy moments of release and realization that with diabetes we can dream big!
Q: What words of advice do you have for parents of children with type 1?
A: I can’t imagine the challenges parents experience. Now in my mid-40s, my parents still look at me with concern in their eyes. I will share that I too struggle watching my child. She participates in diabetes research and worries every time she gets a cold that diabetes is entering her world. It’s a unique experience to have your child worry and wonder if they will get your disease. The feeling that incites in my heart is equally impossible to fully describe.
I would encourage parents to see and celebrate the courage of their children. Fill them with the words: You are strong, you are capable, you are courageous, you are smart. These words take hold and become truths that children can hold onto in the toughest times of life with diabetes. Never underestimate your value in helping shape the courage of your child! My parents still do this for me, and I am forever grateful.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.
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